I've now spent two consecutive Memorial Day weekends at Hospital X with intractable vomiting. Last year I checked myself in. This year, I took the scenic route via three weeks of hard time at Hospital A followed by a transfer to Hospital X. When the nurse blindsided me with the transfer order to Hospital X after COB on a Friday night, I assumed it was a clerical error. The plan that'd been laid out by my primary hospitalist team was to transfer me to a hospital which specializes in CVS. When my (new) weekend hospitalist had run by for +/- 90 seconds Friday morning, he'd said I'd be transferred Monday as planned.

But here I was, 8 hours later, hysterically crying over the prospect of being sent back to the hell which is Hospital X. I finally got nursing to call the hospitalist so I could plead with him to change the order. I let him know that Hospital X's 'care' is better characterized as psychological and physical torture. I firmly believe I am better off facedown in a ditch, drowning in an inch of muddy water, than under the care of Hospital X. The hospitalist attempted to contain his exasperation while insisting that ditches are a far worse fate than Hospital X and I am lucky he had managed to secure a transfer to a new cyclic vomiting specialist there. I've now been admitted for 8 days at Hospital X and haven't seen anyone from the GI department, let alone a CVS specialist. I have, however, been told by hospital police that they would cuff me and take me to jail for taking photos of them ransacking my belongings following a syncopal episode. This egregious treatment doesn't surprise me - indeed, last month I wrote Hospital X a letter of complaint, copied below, which shared how their lack humanity has broken my spirit.

Caught by the Scruff of my Neck

Manometry w/ RSV

Mistaking Hand Sanitizer for Mouth Wash

Central Line Infection

50 Needle Sticks

Broken Femur

Dear Dr. X-

Thank you for your willingness to contact me, the patient in question, regarding my experience with Hospital X. Apologies for the lapse in time, your email disappeared to the bottom of my inbox whenI was readmitted to Hospital A with a central line infection. My choice to return to the facility which gave me the infection, instead of coming to Hospital X, is a good indication of the disdain with which I hold your hospital with.

When Dr. Y visited me during a two-week stay in July, I thought Hospital X had hit rock bottom. During this stay my roommate’s bloody vomit sat clogged in the sink for three days before someone came to plunge it. Sanitary conditions pale in comparison to the forced separation from my friend and advocate who is a Medical Student with your facility. While I fully understand the need to keep relationships between students and patients professional to protect patient privacy/health and their education... Over the years my friend has come to know my health likely better than I do... and long ago I legally gave them permission to access my medical information [so any professional/educational distance is null].

Bloody Sink

Leaky Sink

However, that isn't the stay which brings me to tears when I answer people asking ‘What is the worst healthcare experience of your life?’ - that honor belongs to the 48 hours I spent housed in an on-call room last November.

November’s stay made me appreciate my cellphone in ways that you should not have to appreciate your phone while inpatient at a hospital. Here my phone wasn’t my connection to the outside world - it was how I connected the dots within. It enabled me to contact five of my physicians, all of whom are attending physicians at your institution, when my resident was unable to do so. When the resident insinuated I had not established care with hematology, I was able to call the hematology department and connect my hematologist to the resident in under 15 minutes. At the time of admission, I had given this resident a typed list of my specialists which included the same contact information I used successfully; as such I find it difficult to believe the resident attempted to verify I was an existing patient.

Call Bell

On Call Room

When the nurses couldn't hear the physical bells my roommate and I were given, I resorted to calling the nursing station on my cellphone (Ironically, courtesy of the speaker in the wall of our on-call room, we heard nurse requests from all the other patients on the floor). My roommate did not have a cellphone and I ended up relaying her requests by calling the nurses station each time my roommate rang her physical bell. As such, I didn't sleep the entire time we were in this closet.

However, these communications issues are simply annoyances in comparison to the emotional torture of a fellow human experiencing unrelenting pain.

no beds for the weary

Cramped Quarters

My roommate, admitted for a Sickle Cell crisis, cried hysterically for over 12 hours while her pain remained unmanaged. During this time I called and emailed the patient advocate several times on my roommate’s behalf and ‘rang’ the nurse countless times. Eventually my roommate’s attending came to see her. Unfortunately her physician was “Dr. Feelgood.” I had the misfortune of being this physician’s patient in July. I nicknamed him “Dr. Feelgood” for stopping my pain regimen (developed by a pain specialist) and insisting yoga (contraindicated with my joint condition) would magically fix all my problems. True to form, Dr. Feelgood insisted my roommate's issues related to positive thinking and refused to revert to a pain regimen that had apparently worked before. I’m not a physician and have no idea what pain medications this girl should have been on. But as a human I know that “Tears = Bad” and anyone that cries for twelve hours while begging someone, anyone, to call their physician of record isn't faking it. She didn’t stop crying until a doctor with some humanity sedated her following shift change. The complete disregard for her pain stripped her of her dignity and brought me to tears.

27 hours in paradise... err... the ER Hallway. With a Pulmonary Embolism.

I’ve experienced many horrible things during my healthcare journey. I have experienced pain – I broke my femur in a remote location and spent hours in transit before receiving pain medication. I have experienced makeshift environments - last September I spent 27 hours in a hallway waiting for a bed to open while being treated for a pulmonary embolism. But this experience of complete powerlessness in the face of another’s pain is, bar none, the most profoundly heartbreaking experience of my life.

During this situation, I contacted the patient advocate several times via email/phone and complained in person post discharge. While I am appreciative of Dr. Y for bringing these issues to your attention and find your immediate response very encouraging, it saddens me that as a simple patient my voice wasn't heard.

Wishing you all the best,

Jess Jacobs

Here is their response:

Thanks to my forced transfer to this facility, I've found that nothing's improved. I was slated for discharge earlier today, only to be remanded over dangerously offkilter labs caught when the attending went to signoff on my discharge. These electrolyte imbalances did not become dangerous overnight and might have been treated when I passed out earlier this week. But no. Instead they looked for an illicit cause to my syncope, sending police in to toss my room during my post syncopal phase in which I shake. When the police came in I photographed their aggression. The officers immediately threatened to handcuff me and throw me in jail if I didn't delete the photos while they watched. Obviously I acquiesced instead of finding out whether you go to real jail or hospital jail when you get arrested by hospital rent-a-cops.

Either way, the facility is now unwilling to return my central line supplies. This is a bit of a policy change from when I was admitted - the admitting charge nurse had given back my unlabeled pills with the understanding that I wouldn't take them while admitted. Now I'm being told that, while I have an active prescription from one of their own attendings and can show that I/my insurance paid for these items, the facility will not return the items because my infusion pharmacy didn't label each saline flush, heparin lock, and zofran vial with my name. Additionally, I must petition to have my medical record amended to strike their incorrect suspicion that I illicitly obtained/administered IV morphine to myself while admitted.

Police Insanity

Sourdough Baby

He’ll Fix it!

Precautions

But this was only the beginning of 'Big Brother.' Since I've now passed out twice, I have the pleasure of a Sitter. A Sitter is someone who sits in your room and watches you, presumably so you don't attempt to get out of bed on your own and fall. Previous Sitters have let me know they've found the task of watching me easy/boring/ridiculous since I know who/where I am and play by the posted 'Call! Don't Fall!' rules. This admission is no different. The two falls I've had I called nursing, told them I thought I was about to pass out, and, fell to the floor despite nursing having their hands on me at the time.

However, I can't blame the facility for trying to avoid another fall - as previously explained by a friendly CNA: "We'd rather have you die than fall. There's less paperwork." But with less paperwork comes unintended consequences for the patient - both physical and emotional. Physically I'm losing muscle mass and stability as my only exercise is the 8 or so feet between my bed and the toilet. Otherwise I'm stuck in an alarmed bed 24/7 which is so sensitive, it goes off if I roll over incorrectly.

Emotionally, well, there's a loss of dignity that comes with someone watching you pee or, perhaps worse, visit with friends and family. Of course, this isn't an ever vigilant eye, that would require a living wage or technology implementation. Since we're on the 1980's technology/(presumably) minimum wage package, sometimes the Sitter is asleep. Or visiting loudly with other employees passing in the hall at 4AM. Or singing a little song at 2AM. Or decides to snack on foods that makes you queasy. (Side Note: Mine's currently sitting 5 feet away eating bacon. She's also 8 months pregnant so I really hope I don't fall on her watch. This is a workers comp lawsuit just waiting to happen.)

When I told the charge nurse the Sitter singing/talking/eating at all hours was becoming the last straw, the Sitter took it personally. I tried to reassure her that she wasn't the only reason I hadn't slept in days. No, her disregard is just one of many items on the list - 3AM blood draws, 5AM vitals, 7AM physician visits - disrupting the painsomnia and nausea that have become all-encompassing since switching to oral meds. Why is Hospital X so committed to the oral med 'attempt/vomit/repeat' plan? Because the second I can hold something down, they can discharge. Not exactly the holistic care experience advertised on the website.

Sitter’s gotta eat Bacon!

Feeding Tubes?

Sitter’s gotta Sleep!

I will survive.

While I hate to say it, it seems my emotionally-charged-knee-jerk "I would be better off in a ditch than at Hospital X!" prophecy rings true. And, while my brain isn't quite working (indeed, much of this post was written prior to my semi-forced admission back to Hospital X), eventually it will return and I'll report Hospital X to the various licensing/quality bodies for the absurdity.

The sad thing is... I know my experience is not unique within the community of patients suffering from chronic disease. Everyday patients are harmed by the one-size fits all approach to medicine which makes no room for those with ill-defined syndromes and default to patient blaming. And these real problems can't be solved with hospital wide technology updates or private rooms. While there's a huge focus on prevention and population health (as there should be), we need to be careful we don't forget the 1% of unicorns who make up 20% of healthcare spending. And, while there's obviously no easy answer, there is an answer. We (yes, we as in me and you), as the people who've fallen in love with Mars Curiosity's delightful personality, can figure out how to deliver care that's individually appropriate on Earth. We can. I believe it.

If you've wondered why I've been under the radar lately, look no further than my odyssey of medical maladies; in addition to my ongoing struggle with POTS, this year I've had: a kidney infection, shingles, pneumonia, a pulmonary embolism, and four blood transfusions. Since I’m a numbers person, I downloaded my claims data from my insurer to get a better idea of how much time I’ve wasted in the healthcare system since January 2014.

Useful Visits

This last year I had 56 outpatient doctor visits, 20 emergency room visits, and spent 54 days inpatient. But how many of these visits were useful? As you can see in the table below, not many.

Total Visits

Useful Visits

Useful Visits

Useless Visits

Outpatient

Cardiology

7

3

43%

57%

Endocrinology

1

1

100%

0%

Gastroenterology

6

2

33%

67%

Hematology

2

1

50%

50%

Neurology

1

0

0%

100%

Ophthalmology

1

1

100%

0%

Pain Specialist

8

3

38%

63%

Primary Care

15

2

13%

87%

Psychology

11

2

18%

82%

Rheumatology

4

0

0%

100%

56

16

29%

71%

Inpatient

Emergency Room

20

9

45%

55%

Hospitalizations

9

8

89%

11%

Hospital Days

54

10

19%

81%

Ambulance

7

3

43%

57%

I used the following definitions of ‘useful’:

Outpatient visits were ‘useful’ if it resulted in a change to my treatment or I underwent a test/treatment. Appointments consisting of prescription refills without dose changes, advice I already knew, or second requests for the same thing were counted as useless visits.

ER Visits qualified as ‘useful’ if they resulted in a new diagnosis or ended in a necessary hospitalization. Since there's been a bit of twitter back and forth on this point - the reason some ER visits aren't useful (or are even harmful) is usually for one of two reasons: 1. They refuse to manage my pain because I "have pain medications at home" or 2. I have to make multiple visits for the same reason in a short time frame (for my last blood transfusion I went to the ER three times in the same week before they transfused. At the time of the first ER visit I had a HgB of 8.3 that had dropped from 9.3 in two days. They made me wait until it hit 7.1 before transfusing, despite me being symptomatic during the first ER visit and this being the fourth time this year we've done this song and dance routine.).

Hospitalizations were designated as useful if they were unavoidable. One of the hospitalizations for nausea/vomiting may have been unnecessary.

Hospital Days included a test or treatment; days where the only treatment was saline and Zofran do not count as useful.

Time Wasted

Here I looked at how long it takes to schedule an appointment, wait in the waiting room, fill out paperwork, wait for nursing, discuss the case with the student/intern, and consult with the physician responsible for my care by specialty.

Average Visit Breakdown (In Minutes)

Outpatient

Sched

Wait Rm

Pprwk

RN

Student

Consult

Visit Total

Cardiology

15

50

10

10

5

10

100

Endocrinology

0

15

5

15

0

5

40

Gastroenterology

15

120

5

10

5

5

160

Hematology

120

15

10

10

5

10

170

Neurology

30

10

0

0

0

5

45

Ophthalmology

0

20

10

0

0

30

60

Pain Specialist

15

50

5

10

15

2

97

Primary Care

20

30

10

10

5

15

90

Psychology

15

60

5

0

5

45

130

Rheumatology

20

120

10

10

5

5

170

Inpatient

Wait Rm

Pprwk

Waiting

RN

Student

Consult

Visit Total

Emergency Room

180

15

240

15

15

10

475

Hospital Days

30

15

1320

60

30

5

1460

Ambulance

15

15

30

0

0

0

60

Some Observations:

The fastest experience was with a neurologist who had me in and out of their office in 15 minutes flat; unfortunately he just told me to come back in six months to see if I spontaneously got better (after waiting six months for an appointment).

The most egregious offenders here are GI, Psychology, and Rheumatology, all of which have, on average, three hour wait times as they routinely forget I’m physically in the office waiting for them and/or cancel my appointment without calling me.

My current pain specialist sees me, on average, for 2 minutes per visit, having fourth year medical students examine me and practice giving an (unnecessary) exam. I have to see her each month to get my prescription due to policies and legal issues with prescribing. In calculating usefulness I included student interview time as useful for pain as it's being used to supplement physician time.

On average I wait 20 hours to get a bed in the hospital. My last two admissions were doozies – last time I spent 48 hours in an on-call room, the time before that I spent 27 hours in a hallway (with a pulmonary embolism). I didn’t sleep the entire time I was in these makeshift environments which is obviously detrimental to the healing process.

Value Quotient

In Lean there’s the concept of Value Added Time (things the customer will pay for) and Non-Value Added Time (things not of value to the customer). Since I’m the customer in this situation, I get to define what’s valuable to me and what’s not. Here I defined Value Added time as:

Outpatient Care: Total consult time plus one episode of paperwork and one episode of nursing per specialty. At least once a year I need to update my paperwork, but when there hasn't been a change (and there hasn't been since January) refilling out the forms is unnecessary. Same thing when it comes to nursing/medical assistants - last week I saw 3 outpatient specialists on the same day, in the same system, using the same EHR. All 3 still insisted on taking my height, weight, blood pressure, and temperature. All 3 readings were essentially the same.

Inpatient Care: Total consult time and nursing time. Please remember it's an average - when a 2 hour procedure is preceded by 3 days of nothingness, on average that's only half an hour of value per day.

The Value Quotient is value added time divided by total time. Here I did two calculations – one which calculated the value per visit, and one which discounted the Value Quotient per visit by the percentage of visits which were useful.

Value Breakdown

TotalTime(Hours)

Non-ValueAddedTime(Hours)

ValueAddedTime(Hours)

ValueQuotient(Total)

ValueQuotient(Discounted)

Outpatient

Cardiology

11.67

10.17

1.50

12.86%

5.51%

Endocrinology

0.67

0.25

0.42

62.50%

62.50%

Gastroenterology

16.00

15.25

0.75

4.69%

1.56%

Hematology

5.67

5.00

0.67

11.76%

11.76%

Neurology

0.75

0.67

0.08

11.11%

0.00%

Ophthalmology

1.00

0.33

0.67

66.67%

66.67%

Pain Specialist

12.93

12.42

0.52

3.99%

1.50%

Primary Care

22.50

18.42

4.08

18.15%

2.42%

Psychology

23.83

15.50

8.33

34.97%

6.36%

Rheumatology

11.33

10.67

0.67

5.88%

0.00%

106.35

88.67

17.68

16.63%

4.75%

Inpatient

Emergency Room

158.33

154.75

3.58

2.26%

1.02%

Hospital Days

1296.00

1290.50

5.50

0.42%

0.08%

Ambulance

7.00

6.50

0.50

7.14%

3.06%

Total (Minutes)

1567.68

1540.42

27.27

1.74%

Total (Days)

65.32

64.18

1.13

Some Observations:

The only reason Primary Care received any value attribution is because I need someone to renew prescriptions for anti-nausea drugs, letters for FMLA, and send records to hematology. I feel bad that their years of medical school and residency are being wasted on purely administrative procedures.

Some of these specialties were overly impacted by the amount of time it takes to schedule visits. For instance, hematology took six months and over four hours of my life to schedule one visit; however, the time spent with the doctor herself is quite valuable. Conversely, Ophthalmology and Endocrinology were scheduled using a third party platform so the scheduling process was very smooth, but using the third party platform led to billing issues. If I accounted for the time-value of money, the numbers would shift a bit.

Since anxiety and sleeplessness make my conditions worse, you could argue that time spent stressing over potential central line infections from sloppy nursing, negotiating with physicians to receive humane treatment, being woken up by medical students for their educational benefit, developing a kidney infection due to inattention and disregard, and it taking multiple ER visits for an issue to be treated should count as iatrogenic harms, but let’s keep the math simple here.

Recap

This past year I’ve had 20 ER visits leading to 9 hospitalizations spanning 54 days. I haven’t had a single vacation day that hasn’t been spent in or at the hospital this year. Looking at a recent HR statement, I’ve taken ten weeks off related to my medical conditions, most of which was unpaid. If I don’t take the whole day off for an appointment, I have to get to work early or stay late. Additionally, you only get so much FMLA time and if I'm wasting it being stressed out by nurses and back-channeling doctors to coordinate care, I'm not using the time to heal.

I understand that my case is complicated and it takes a significant amount of time to coordinate. However, there's no reason I need to physically be in the physician's office or at the hospital while they make phone calls on my behalf. I’m a social person and every second I spend in the hospital or ill is another second I’m missing out on friends and family, that I'm missing out on life. Speaking of friends, they've been immensely supportive of my care. Since I've had so many bad ER experiences I now refuse to go without a companion - ie it's not just wasting my time, it's wasting #TeamJess' time as well.

So yes, I owe the medical system my life for giving me blood when my hemoglobin drops deathly low. But there's no reason a 4 hour transfusion required 84 hours of negotiation and frustration. There's no reason that only 4.75% of outpatient visits and .08% of my hospitalizations are spent actively treating my condition. There's no reason that I spent two solid months (1540 hours, 64.2 days) of this year waiting instead of healing.

So, please, stop wasting my time. Stop wasting my life.

Meme'd photo of my cat Oliver by Dr. Hayman Buwan, @CurryJazz. Apparently the words on the clock are Italian and say "Punctuality and Courtesy is of the King"

This year I get to be one of the 41,000 Americans to develop a Central Line Associated Blood Stream Infection (CLABSI). Since the general population’s chance of getting one of these is .0001%, I feel pretty special. As it turns out, these things are deadly and expensive. Since I’m me, I managed to get the most deadly kind of enterobacter bacteremia, enterobacter cloacae. Like the 42.6% of people die kind (usually CLABSIs only kill 12-25%). This also means it was the expensive kind. Haven’t seen a final bill, but based on past hospitalizations, my insurance company will actually pay out about 89 thousand dollars (average is $16,550) for the ten nights and 12 days I spent in the hospital. While definitely the most serious side effect of the PICC line, it was simply the last in a saga of medical errors and complications associated with the two lines I had.

Complication 1: Intraluminal Occlusion

The day after my Intravenous Lecture, my friend dragged me to the ER and they forgot to flush my PICC line with Heparin. Which means it clotted. Which means I was back in the ER 12 hours later and had to have the thing removed due to a intraluminal occlusion (while not as special as my CLABSI, still only 3-9% incidence rate).

Getting a line removed is totally painless, but knowing it was the first time someone did it kinda freaked me out.

Despite what I was promised by the advice line, the ER wouldn’t put in a replacement PICC and told me I’d have to go back through my cardiologist’s office for the replacement, Unfortunately, if I don’t do the saline therapy, I pass out. Which I did, about ten times in two days. When I woke up on day three, the hospital magically had an opening to replace the line that we followed with a three day admission to bring me back to stable. Which was awesome.

Near-Miss-Complications 2 and 3: Possible Clot and Line Movement

After I got the second line life was good - only complication in two months was a clot that resolved pretty quickly (if it was even there). The line also moved 2 inches out of my arm which I didn't realize was a problem. When I eventually ended up in the hospital for the CLABSI, the nurses there freaked out that my home care nurse hadn’t sent me in for an xray to check the line placement. Whoops.

Looks clear to me!

Complication 4: The Healthcare Associated Infection

The six weeks of relative bliss eventually came to an end and I ended up in the ER and left with a concussion and an infection. Will it get reported as an HAI? Probably not since there were multiple parties involved in the line’s care (me, home nurse, prompt care, primary care), but considering the timing, I’m pretty convinced I got it at the ER.

I live in a studio apartment with six separate forms of hand cleaner. It definitely wasn't me.

As per usual, I ignored my symptoms and went about my business - presenting at XXinHealth with, as fellow speaker Donna Cryer put it, a lovely 102 degree glow. At Datapalooza the next day, I mentioned the fever to a friend who tattled to everyone’s favorite bow-tied doctor - who was finally able to break through my ill guided notions that I might “burn it off." By the time I got to the hospital, I was running a fever of 103.8 and was pretty sure my teeth were going to chatter straight out of my head. All things considered, I didn’t feel that bad – I actually felt a little guilty for getting jumped ahead of the kid who obviously had a stomachache. Granted I was on the verge of septic shock, but you know, whatever.

Grow Baby, Grow!

New Drugs = Winning! (even if it means getting stab happy)

Breakfast brought to you by Cardiac ICU.

Close at Heart.

Complication 5: The Allergies

They admitted me and tried some Vanc for the more common bacteremia. Then my culture started growing something gram negative, so they freaked out and called infectious disease who said the PICC line had to come out. Anyways, once they determined I'm also allergic to penicillin's first cousin, Piper, I was finally started on my stalwart, Cipro, and stopped hallucinating. Which kinda took all the fun out of this whole saga, but I guess it had to end in the interest of, you know, living.

PICC line removal. They called me sweetpea.

Since I had to do twice a day IV antibiotics and my veins love to blow, the hospital had to keep me until they could place a port for home antibiotic therapy. Port placement was an adventure in and of itself - there was an epic yelling match in the OR between the surgeon and the nursing team over patient throughput (took 6.5 hours instead of 1) and whose job it was to make sure I'm not pregnant. Then the anesthesiologist, who was actually a DDS, asked me what grade I'm going into next year. Sparkly blue nail polish actually does take off ten years. Who knew?

Should those shoes be in here?

Two holes? Really?

New box in my chest!

Immuno-what?

Then we had a series of totally minor allergies. First they used sorbaview to cover the port when I asked them not to and ended up with an awesome rash and some blisters; it's been two weeks and they're mostly cleared up, so it's ok. Then I was discharged and the homecare company gave me drugs which, while labeled correctly, were set to incorrect rates; the resultant rash went away in a few hours and I didn't actually puke, so it's cool. Then I was prescribed contraindicated drugs that more than doubled my blood pressure; still, got off totally stroke free, so it's all good.

What was the point again?

So what’s the point of all of this? The point is that when you’re working with humans there will be mistakes. Most of them won’t kill you. But when you’re working with central lines, they might. See, I’m not immunocompromised and I still spent 12 days in the hospital over an HAI. And that’s a big, big deal. Particularly because it was completely avoidable. Proper hand hygiene is the easiest, cheapest, and most effective way to bring down the number of HAIs. I know that- it imprinted on my brain during grad school and my lean six sigma green belt project was on hand washing. But even I don’t know what nurses can touch with their bare hands after using hand sanitizer, what they need to wear gloves for, and what they need to be sterile for (untouched by human hands). I asked about the observed differences in technique and my nurse told me that variations were due to whether a nurse had a bad experience with a drug before (eg it spilled on them before and they got sticky so they now wear gloves). Ad hoc variation aside, my most shocking observation is how nurses interacted with pagers/phones. There were many times in which a nurse would be wearing gloves to fix my IV, have their phone ring, pick up the phone, and then go back to what they were doing without changing gloves or washing their hands. It’s as if the phone was magically excepted from clean and sterile procedures. The "need" to be connected all the time has become ingrained into our culture at the expense of patient safety. As much as I love technology, I'm not a fan of it when it could kill me. So if you learn nothing else - don't text and drive. Or touch central lines. Trust me on this one.

So, this one time I totally spent a whole summer vacation in the hospital, just to see what it was like. Not really. But I did manage to get a central line infection from a PICC line and actually did spend my summer vacation BEATING DEATH (you wish you could say that). Anyways, it was twelve (AWESOME!) days in the hospital which weren't actually that bad because I spent the whole time eating breakfast in bed and seeing like all my friends. We even had a whole Google+ event on it (hosted by the lovely Ted Eytan). We also had an awesome google hangout. Yeah, my friends are amazing.

Welcome!

Family: One Direction
Drama: Katy Perry

Kitty Channel is a Real Thing

As is the Puppy Channel

New Channel – African Safari

Day One

Grow Baby, Grow!

You know that feeling when you get a 104 degree fever? Yeah. That feeling. But you don't have to wait in line at the ER so that's excellent. Plus, blood stream infections don't make you sick like flu sick, they're just a fever which doesn't actually feel that bad (Obviously you should trust the memory of the person who was shivering like it's Antartica, not in DC in June...).

Day Two

We need a drug pump for zofran?

And then you just spend a day bored out of your mind? But you did have some kinda awesome hallucinations. And you got to see your favorite suit who gave you a Little Mermaid pin.

Day Three

PICC lines are rough, man!

And then they try you on Penicllin's cousin, Piper (which you're allergic to) and literally crawl on top of you to change out your PICC line dressing for (seemingly) the fun of it? But your friend totally brought you Kale AND an all organic-vegan milkshake which made your inner Berkeley dance.

Day Four

And then they pull out your PICC line (not for the fun of it). But your friends bring you homemade strawberry jam and make you a sock puppet, so the nurse still calls you her "happy flower" and you know it's all going to be alright?

Day Five

Smokey Bear is Sad!

Ted thinks this is unhealthy

Pride!

Cue the Lady Gaga

Always Love

Thanks Regina!

And then Smokey Bear says you have to get new iPhone cords? But then your friends come to visit because they're awesome? Yeah, this friend, and this friend.

Day Six

Clowns!

Minor Details.

Happy to See You!

Wait, is this a premonition?

California Love.

No, really? What is with today?!?

And then you start to make friends with your food and everyone decides that after day 5 you must be dying so they start sending you Bible verses and the timing kinda-sorta-freaks you out?

And then you (actually) start dying, but it ends up ok?

Day Seven

So you wake up and do a half crazed monologue on beeping alarms and then you totally sign off on a surgery without really knowing what you're getting into?

11:00PM: Pass out. Smack head.
11:25PM: Pass out. Miss head.
12:00AM: Pass out. Get caught. (Rinse. Repeat. 5x. 12:30-1AM).
01:00AM: Get picked up and carried to bed. Have friend leave.
01:30AM: Have friends come back. And attempt to convince you to go to the hospital.
01:45AM: Call your friends in CA to convince your friends in DC that you don't have to go to the hospital.
02:00AM: Sleep.
04:00AM: Wake up. Go to bathroom. Pass out.
05:00AM-11:30AM: Exist in Twilight.
03:30PM: Have friend come back.
03:35PM: Have friend call his doctor friend in a thinly veiled attempt at convincing you to go to the hospital.
03:40PM: Know what he's doing and go to the hospital even though you don't think it's necessary.
04:00PM: Arrive at hospital. Have no idea what happens to the car.
04:03PM: Get escorted back to room.
04:05PM: Get hooked up to every machine.
04:10PM: Try to make deal that involves an abortion to avoid peeing in a bedpan.
04:12PM: Fail.
04:15PM: Get stuck.
04:16PM: Get stuck. Have nurse give up.
04:30PM: Get stuck.
04:32PM: Get stuck. IV Success!
05:00PM: Make jokes about tweeting at Todd Park.
07:00PM: Almost get a CT scan. Almost pass out instead.
07:45PM: Lose talking privileges in re: work.
07:55PM: Lose talking privileges in re: everything.
08:00PM: Get CT scan.
08:10PM: Try to make deal to leave hospital.
08:12PM: Fail.
08:15PM: Sit up to breathe. Get dizzy and nauseous. Almost pass out. Get caught. Be laid down.(Rinse. Repeat til 11PM).
11:00PM: Freak out.
11:02PM: Get told you’re being admitted.
11:03PM: Get morphine.
11:15PM: Agree to license the 3 M’s to a nonprofit.
11:16PM: Stereotypically outsource thinking to Indian friend.
11:17PM: Finally get that Morphine trumps Mind and Matter.
11:30PM: Get fed pringles and Gatorade. Think it’s the best thing ever.
11:45PM: Get moved to hall.
12:00AM: Fall out of wheelchair. Have friend pick you up put back into bed.
12:15AM: Get transported upstairs.
12:30AM: Get put into bed.
12:40AM: Have friends leave.
12:45AM: Get new telemetry devices and percocet.
02:00AM: Get morphine.
02:30AM: Fall asleep.
03:00AM: Get woken up by IV beeping.
03:15AM: Have nurse turn off IV noise.
03:20AM: Get woken up by IV beeping.
03:25AM: Hit IV buttons til they stop beeping.
04:00AM: IV starts beeping. Go into hallway and freak out over beeping. Almost pass out.
05:00AM: Get Ultram.
05:30AM: Sleep.
06:00AM: Get woken up for blood pressure.
06:15AM: Sleep.
07:00AM: Get woken up for blood draw.
07:15AM: Sleep.
08:00AM: Get woken up to talk to med student.
08:15AM: Sleep.
09:00AM: Get woken up by roommate’s doctors.
09:15AM: Sleep.
11:00AM: Get woken up by roommate’s visitors.
11:30AM: Have Drs and 15 med students round. Get told there’s nothing they can do.
12:00PM: Call nurse and go to bathroom.
12:05PM: Pass out. Not get caught by LVN you called. Hit head.
12:10PM: Get visited by nurse manager.
12:15PM: Puke. Start Shaking.
12:30PM: Have doctor come visit and tell nurse to give Zofran.
12:32PM: Have nurse refuse to give medication until the doctor physically writes it.
12:33PM: Have doctor promise to write script.
12:35PM: Get Zofran.
01:00PM: Get more Percocet.
02:00PM: Fall asleep.
02:30PM: Wake up because IV has blown and is leaking all over the place. Hit call button.
02:45PM: Get tired of waiting for nurse. Stop IV flow yourself.
02:50PM: Have nurse get mad because you made her replace her gloves before she replaced your IV.
02:55PM: Get stuck.
03:00PM: Get stuck. Have nurse give up and refuse to pull out infiltrated IV.
03:30PM: Have tech come to replace IV.
03:33PM: Get stuck.
03:35PM: Get stuck. It works.
04:30PM: Have nurse come back and reconnect IV. Remind them to pull out leaking IV.
05:00PM: Get dinner.
05:30PM: Puke.
05:40PM: Ask for more Meds.
06:45PM: Get more meds.
07:30PM: Exist in twilight
08:30PM: Have friend show up with Happy Meal. <3.
08:45PM: Get discharged.
09:15PM: Pass Out.
09:20PM: Get tucked into your own bed.
09:30PM: Fall Asleep. Stay Asleep. Bliss.

So this morning I had a loop recorder put in my chest to watch my heart rate. The procedure went well.
I was super impressed by the pre-op team. One nurse in particular was really good- she was all about people checking my ID band and made sure the antibiotics got started on time. The PACU, not so much. Somehow the IV never got removed before I was discharged. They called 2 hours later to see if the IV was still in my arm. It is.

You can tell I’m really anxious about this.

Obligatory Wrist Band Photo.

Hair Style is very important for days like today.

If I were to ask the why questions:

- why was the IV left in?
Because the patient was dressed and we didn't see it
- why was the pt dressed?
Because they were d/c quickly
- why was the pt d/c quickly?
Because they were freaking out
- why was the pt freaking out?
Because the drugs used weren't right and they were alone

This ain't so bad.

Drugs:

- why weren't the drugs not right?
Because we didn't know the last time the pt had surgery she got anxious
- why didnt we know that?
because the patient didn't realize there was a correlation.
- Why didn't we fix the drugs?
Because their oxygen was low
-why was the oxygen low?
Because the drugs weren't right
-why didn't we fix the drugs?
we cant dc people if we give them more drugs
- why did they have to be dc?
Because they were anxious... And we needed the bed.

I had this done on Ekat’s Birthday and she brought me presents. Such a sweetheart. <3.

A couple of weeks ago my friend fell off his bike and smacked his head. He got a small brain bleed and had to spend the night in ICU. Like most healthcare visits there were some hiccups – they didn’t contact me until 5 minutes after visiting hours ended, there weren’t drug orders (I swear he saw death coming for him while we waited for a script), and, of course, the doctors rounded at 6AM and we had to wait nine hours to find out his status and disposition (home!).

But what really bugged me? The medical record release process.

To ensure continuity of care we need his records from the hospital for a neuro followup on Friday. I figured it’d be pretty standard -- just have the specialist’s office call and fax over a request. I wanted to make sure his records made it so I double-checked the process this morning. They told me they wouldn’t release the records without an original signature. No faxes allowed. We could mail it in or come in person.

Ok, fine. Instead of making him get in a car (makes him sick) or do a lot of running all over town, I had him send me his power of attorney. See, there's loophole in their “original” signature thing – as his power of attorney, I can make his decisions (or, in this case, get some copies made) with my original signature. No problem- I sent him a standard health POA, he signed it, got it witnessed, sent it back, and I went to the hospital in person to get some records. The interaction went something like this:

Records Clerk #1: Can I help you?

Me: I need some medical records sent from here to Kaiser.

RC #1: Are you the patient?

Me: No, but I’m his power of attorney. Here’s the paperwork.

**RC#1 peruses the paperwork**

RC #1: Let me check with someone else.

**RC#1 talks to RC#2**

Records Clerk #2: Where’d you get these signatures?

Me: I had him sign it and send it to me.

RC #2: This isn’t his signature.

Me: Yes it is.

RC #2: It doesn’t match the one we have on file.

Me: His brain was bleeding when you got that. This is his real signature.

RC#2: Who are you?

Me: His friend.

RC #2: Just a friend? And he gave you Power of Attorney?

Me: Yes.

RC#2: You printed this off the internet. This isn’t a Power of Attorney.

Me: He’s an attorney and I have a master’s in health administration. This is what we do. It's legal.”

RC#2: Let me check with my supervisor.

Me: Ok.

Supervisor: Who are you?

Me: His Power of Attorney.

Supervisor: No, who are you?

Me: His friend… **looks at me like I’m crazy**… I’m his person.

Supervisor: His significant other?

Me: Sure.

Supervisor: Ok. **looks at the POA** This isn’t notarized.

Me: If you have two witness signatures, you don’t have to get it notarized.

Supervisor: …I just don’t know enough about this and my Supervisor isn’t in. Why don’t you have them fax us to fax them?

Me: That’s what we tried to do this morning. Your office said I had to come in person!

Supervisor: Well, here’s our fax number… we’re just really careful.

After that I called Kaiser. Got the right form. Filled it out with the wording to make sure the records get sent from provider to provider. Sent it to him, had him sign it and fax it in. A fifteen minute process that, because of the runaround, took three hours. Still waiting on them to confirm receipt. Despite this hospital being on track to achieve Meaningful Use, they said it may take 7-30 days to get his records. Fingers crossed, that CAT scan makes it to neurology on Friday…

When there are too many hoops to jump through - like needing to provide a original signature - inefficiencies abound. When people are uninformed - like insinuating "just a friend" isn't the legitimate POA- there's a real liability issue. Look, I want medical records to be private and secure. I understand that there are real consequences for data breaches and HIPAA violations. I get that creating information from data can be difficult and health literacy is a real concern. But there are ways to mitigate these issues. HIPAA fears should never be an excuse for disrupting the continuum of care.

And, like clockwork, I fall, semiconscious to the sidewalk on the corner of Pennsylvania and Constitution.

Somewhere above me someone is concerned. “Is she ok?” “Yes” “No, really, is she ok?” “Yes, she has a heart problem.” “Really? Is she ok?” “Yes, I’ve got this.” “You’re sure?” “I’m sure.” Yes, lady, he has this. He always has it. No matter how embarrassed he is. No matter how inconvenienced he is. He has this.

Apparently most people grow out of this. But I’m not most people. I’m 25. I’ve had POTS since, if I’m honest, I was about 9. When I finally got it diagnosed at 21, my condition became legitimate. I’ve seen the statistics; the odds that this goes away after fifteen years are almost nonexistent. I won’t die, but sometimes I’ll want to. As my cardiologist put it, “I’m [his] problem.” I’m the one he can’t fix. But that makes sense. I have an idiopathic condition. It lies somewhere between the heart, autonomic nervous system, and mind. It’s a veritable no-mans land of drugs and specialists where there’s no cure and very little understanding.

During my last “bad” episode, my friend called to check up on me: “Jess, if they make you go to the hospital I’m not going to fight them. Plus, isn’t that what you do?” No, that isn’t what I do. Yes, I have a degree in Health Systems Administration. Yes, I’m an “expert” on Health Information Technology. But that doesn’t change the fact that I’m a horrible patient. That I carry my medical records around with me in a hot pink binder. That I hate hospitals.

And I always have. If I had my way, I’d keep everyone out of them. It’s why I “do” health IT. See, I’ve been in lots of hospitals - from community hospitals to major academic medical centers. They're filled with well intentioned, highly trained, people. Unfortunately the mechanisms these care facilities have put in place don't actually connect the people within, let alone between, instances of care.

I used to think I’d trade anything for perfect health. Now, I don’t know if I would. See, I’m happy. I have people. I have a future. And I know that my life has been influenced by my sickness. Without it, I wouldn’t understand. I wouldn’t understand powerlessness. I wouldn’t understand frustration. I wouldn’t understand that the system is broken.

How broken? During one stay, despite my credentials, I ended up semiconscious at the bottom of a flight of stairs, in tears, begging to go home. See, in the moments I’m a patient, I can’t manage my life. And, despite their credentials (on this visit: a MD/MBA, a MPH, and three MHSAs), my friends can’t manage it for me. Can you imagine someone without this support system navigating the bureaucracy that is healthcare? I don't know how they do it.

Luckily this is only one side of my coin— I’m healthy enough to have a day job advising the people that chart the course of American health policy. The philosopher Herodotus got it right: “the greater the man, the greater the misfortune,” or, as our friend Peter Parker put it “with great power comes great responsibility.” I know that the weaker I get, the stronger I become. The weaker I get, the more I understand that my care continuum isn't the only one with flaws. The weaker I get, the more I understand that together, we can change our health system. That the whole is greater than the sum of its parts.

Back under the glow of the US Capitol, I hear my friend:

“Jess, you’re broken. But I’m broken too. We’re all broken.” “You think that together we make a whole person?” “Yeah, Jess, together we’re a whole person.”

So it finally happened. I passed out at work. On my way back from a seminar in the Switzer building I passed out. When I came to, Farzad Mostashari was checking my pulse. I remember looking up at his bow tie and kinda freaking out (It's an awesome bow tie and all, but he's kinda a big deal...). Then he was yelling my medical history across the parking lot at HHS. To I guess, the rest of his people, I think they're pretty much all doctors. Such a dignified moment for me.

Anyways, as this was the first time this happened at work, people pretty much insisted that I go to the hospital. Considering there were at least 10 doctors standing around, I figured they must be right (and if not, best to peace out ASAP!). ]I got a room in the ER where they did a standard workup. It checked out (as always). After about 4 hours I got moved to the hall. Sat there for a few hours. All of the sudden I get told that I have a visitor. I was expecting my "multiple delegates" from school, but not Wil and Sachin. For all their suits and hard work, those ONC guys are good people.

At this point I had been admitted and was waiting for a room. Just after Wil and Sachin left, some guy called me a "cracker ass ho" and let me know there was no possible way I could actually have health problems. He was laying on a gurney not even a foot from me and making my head hurt like hell since I had smacked it a few times since getting to the ER. It was at this point, Phil, Karen, and Matt came to visit and brought me a Happy Meal (best friends ever!). I remember hugging Matt and not wanting to let go. I wanted someone, anyone to hold on to.

Eventually my head hurt so bad that I left a note on my bed and found an empty waiting room and just sat for a minute. Unfortunately a resident found me. Apparently I wasn't supposed to be out of bed or off the monitor. But my head hurt so much and the guy yelling was just making it worse. Plus, the monitor was out of batteries and wasn't recording anything anyways.

Upon making it back to the ER (we're at hour 12 here...), the resident put me in another room. Finally quiet. Five minutes later my bed was ready. Guess that just goes to show that when you give up, you get what you were waiting for.

Anyways, got my telemetry bed at 2Am. Finally got to sleep. Then rounding at 6. At 10 we had the cardiology teaching contingent. All 5,000 of them. So stressful to have all of these people in my room. The head pontificated saying there was nothing he could do.

I immediately lost it. I could have gone home the day before. Hours and hours of my life were wasted. I was yelled at. My head hurt. My friends could have taken me home hours before. I could have been home, asleep. But instead I had been convinced that someone was going to help me.

So I left. Unfortunately I didn't make it far. I made it to the exit and ended up half conscious on the stairs exiting the hospital. They called rapid response and took me back to my room. I remember the cleaning lady saying my bed wasn't clean, but they told her it was mine. I definitely wasn't being logical. It's weird that whole occurrence seems like a dream, as if I were under water for the whole thing.

An hour later I called Phil. I was so broken down I was crying, begging him to come get me. I didn't want to be there. Two hours later the neurology guys came to see me and seemed to have a remedy for what ailed me (had I known they were coming I wouldn't have checked myself out -- communication FAIL!).

Karen and Phil came to get me about 2PM. I wanted to go to school. They vetoed that idea (mom and dad are smart!). I had energy for about five minutes while Phil made sure that I got paper copies of my neurology session. Once I was back in my bed I started to crash. Transport got me to the lobby and had to leave before Phil got his car around. By the time they got me in the backseat, I was half conscious again.

I remember Phil and Karen getting Chinese food. They tried to feed me but I wasn't hungry. Then they took me home. My body wouldn't keep a temperature. First I was hot. then I was cold. They were worried. For the life of me, can't figure out why I got discharged. Phil wanted to check me back in, but eventually it was all good again.

No solutions, just a wasted night. But, hey, at least I had my people.

[[ No, it won't always go the way it should, but I know the heart of life is good -- JM ]]

Some amazing things have been happening. No, I didn’t get into grad school (one can hope….), but I did get a huge opportunity to create a public health reporting system for TLH. I get figure out what holes are missing in the statistical correlations between HIV/AIDS and STD's and create supplemental questionnaires about behaviors which might effect the results. I’m so excited.

[[ Thank you for making me struggle, Tell me the world ain't mine -- I'm a miracle baby -- I refuse to lose -- Tell me what do you see when you look at me -- On a mission to be what I'm destined to be – M/TI ]]

Secondly, I became a site administrator for sfhomeless.net, a totally awesome wiki targeted at players in the homeless community

[[ Give me your eyes for just one second -- Give me your eyes so I can see -- Everything that I keep missing -- Give me your love for humanity -- Give me your arms for the broken hearted -- Ones that are far beyond my reach -- Give me your heart for the ones forgotten -- Give me your eyes so I can see -- BH ]]

Ok and finally… I Ran. On the verge of becoming trite, "I can’t believe it." I ran an 11.5 minute mile today. I haven’t run a mile since, well, yesterday (15 mins), but before that I haven’t run in probably a year. I couldn’t believe I didn’t pass out! I finally feel like I’m getting control of my life. This week I grew up. No, really. For the first time in my life, I knew, on my own, when I couldn’t handle that whole fainting thing and I actually asked for help from a qualified medical professionals (ie the emergency room). Not only that, when they brushed me off, I went back and got hyphy with them. And it got results. It was completely unprecedented by my previous actions and for that I am amazed with myself. I wasn’t independent and at the same time I was my own advocate. Seriously people, be amazed.

[[ No more stress, now I'm straight -- Now I get it now I take -- Time to think, Before I make mistakes -- That part of me left yesterday -- The heart of me is strong today -- No regrets I'm blessed to say -- The old me dead and gone away -- TI/JT ]]